How I turned my mum's dementia into something positive

It wasn't until the unexpected death of his father that James Ashwell realised his mother, Fay, had dementia, at just 54 years old. He moved back to Birmingham to look after her until she passed away in February 2012. Here, 36-year-old James shares his story and explains how caring for his mother led to his own business,Unforgettable, a marketplace of products and services for dementia and memory loss.

These products will now be on sale on the high street through Lloyd'sPharmacy. The launch comes as new research has revealed half of Britain's generation of a 'baby boomers' fear is the prospect of having to care for a parent with dementia more than a dementia diagnosis of their own, with 81% saying they would feel 'ill equipped' to support a relative with dementia.

"My mum was the best mother in the world. She was a Scouts leader who raised funds for local hospices. She was a florist, and a trained chef. The type of person that just devoted her whole life to others."

"I first noticed something was wrong when I was about seventeen. I was in the cadets and I had just been away for a weekend of training in the countryside. Mum came to pick me up. She drove for about a mile on the wrong side of the road. My friend and I were in the back thinking "what's going on? What's she doing?" And that's kind of the first time I realised she just wasn't there - she just wasn't concentrating."

"And then, a few years later, when I went to university, she stopped being able to really communicate on the phone, because she wouldn't concentrate. She would sometimes just put the phone down and wander off."

"After I graduated, and was working as a consultant in London, I got an unexpected call from my next-door neighbour. My dad had died. He'd woken up in the morning, fallen out of bed and died of very rare illness that had stopped his heart functioning. I had to call each of my three siblings on the way to the train station to let them know what had happened. I got back to Birmingham and realised my mum just wasn't right. I think the shock of Dad's death had really impacted her. It's well known that grief can advance dementia significantly. My firm gave me six months off, but I never went back."

Enjoying wonderful moments

"My siblings and I drew up a bucket list of all the things Mum had ever wanted to do. I took her to India and we backpacked the whole time. We caught the sleeper trains and wore rucksacks. It was really difficult because that was when her incontinence started. I was there on my own with her in a third world country with a backpack on and mum with diarrhoea all down her legs. It was tough, but I've got amazing photographs of us watching the sunset over the desert. It was an incredible time. A lot of people think of dementia as the end of life, but there are still amazing things you can do. I did more with my mum after I moved home to look after her than I ever did before."

James Ashwell

Facing challenging situations

"But one of the biggest challenges was sleep. My mum would get up in the middle of the night confused by day or night. Sleep is one of those things that makes everything worse. If you don't sleep, everything else seems unmanageable."

"Another tricky thing is incontinence. I came home from work one day and the dog had pissed all over the house. And my mum had been incontinent, and she had it all over her hands and all over the floor and on the furniture. It was just one of those moments where you either laugh or you cry. And it was really undignified for her, so that's a really difficult one to deal with."

Improvising solutions

"But I developed some coping strategies. For the sleep problem, I used to tie string from mum's door to my finger and then sleep like that, so if she woke up in the night, I would wake up and know that she wouldn't fall down the stairs. And then I met a carer who said: "why don't you just get a baby monitor?" That changed my life. I started sleeping properly again. "

"Mum was told by her doctor that she couldn't continue to cook because she was cutting herself in the kitchen and was being a bit dangerous with hot things. She had been a chef and cooking for her family was core to her self-identity, and taking that away from her would have been terrible. We spent ages trying to figure out what to do and in the end we found this chicken factory in Northampton where the staff had to chop up chicken all day. I phoned up the managing director there who felt sorry for me and sent me ten pairs of Kevlar-lined gloves. That's what they use to stop their staff getting their hands chopped. So my mum then got into this habit quite early on, and every time she came into the kitchen she would put on these gloves and she could touch hot food, use knives and continue cooking for two years longer than she would have been able to. It made a real difference and kept her doing things that were meaningful to her. "

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"Most people think there's nothing you can do when someone gets dementia. It's like it's the end of the world, but it's not true. Several products really helped us in this journey and that's really why I set up a website: to help people to discover that there's loads of things out there."

"In the last few years of my mum's life I started going to a care centre with her on a Wednesday, and they were great. I met other carers there, and they told me about the solutions they've cobbled together at the point of crisis."

Know that you're doing the best you can

"My advice for someone caring for a parent with dementia would be don't ever feel guilty. I speak to a lot of people who say: "it's amazing what you do, I feel so guilty that I'm not doing it," but that's irrelevant. I was in a fortunate situation to be able to do it. Just do what you can and what you feel able to do."

"Secondly, you'll always be amazed at what you can find if you just give things a go. There are so many creative ways to enjoy life with dementia."

"And lastly, look after yourself. Look for carer centres and other organisations which alleviate the pressure of caring for someone. You can't care for someone properly if you end up burning out."

James Ashwell is the founder of Unforgettable: a business of products and services for dementia and memory loss.

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